T-DM1 - need advice

[eric]

Hi all,

Caryn continues to have a very hard time with side effects on this weekly trial. The worst is the cysts that the drug seems to be causing in her eyes. She has become incredibly sensitive to light and is now wearing sunglasses day and night. She's seeing a cornea specialist who is trying to keep it from getting worse but we're all nervous about any permanent damage and the impact this is now having on Caryn. As a result of me asking the Dr at Sloan to reduce the dosage or frequency, she's contacted Genentech who has stopped Caryn's treatment until they see improvement in her eyes. The drug was kicking the cancers butt but I'm now very concerned about the non activity as she's now had only 1 treatment in the last 4 weeks. This seems to be a great drug and don't want to stop it but also don't want to sit idly while the cancer builds up.
I welcome thoughts and suggestions.
Eric

[Mary Jo]

Hi Eric,

I can't offer you any advice for Caryn but I know somebody here will be able too.

I am only posting to offer my love and prayers to you both. I can only imagine how tough this must be but the good news is that this trial is "kicking cancers butt!!!!" I will pray that Caryn's side effects can be managed and that she can get back on the drugs soon.

Love to you and know that my prayers surround you both.

Mary Jo

[eric]

Thank you Marejo.

[runtolive]

is caryn on the 2.4 every week... maybe they can skip doses to control the cysts...

[chrisy]

Hi Eric,

Wow, that's a very tough situation. I know you want to fight for the drug because it is beating the cancer...while at the same time, Caryn is really struggling with this debilitating side effect. It sounds like its a major QOL issue.

As you know, Herceptin stays in the system for some time so this is likely also the case with T-DM1. They say the drug clears quickly but this is not always true. So although I know you must be imagining rampant progression in the absence of treatment, this may not be the case.

Of course, Genentech is going to be very very careful about serious adverse effects and this is why they are withholding treatments. I wonder, is feeling that YOU are not able to make the decision making it worse? I know I just about flipped out when I thought I was about to be kicked out of my trial.

It seems that all you can do is wait, hope and pray that Caryn's situation gets better soon and she can resume treatment. And make sure your doctor knows you want to continue in the trial as soon as possible, because as I learned your desire to continue does make a difference.

Hang in there my friends
Chris

[Mary Anne in TX]

What a difficult position to be in. As I read this earlier, I stopped to ask myself what I would do were I in yours and Caryn's situation. I don't think I could make the decision alone. I'd probably have to talk to several doctors & nurses and pray my heart out. It's so hard. I'll just pray that one far wiser than I am will figure out how to protect Caryn's eyes and still reap the benefit of the trial drugs. Much love and luck, ma

[Julie2]

Eric,

You and Caryn are in my thoughts. Probably reducing the dose might solve the eye issue.

Julie

[kareneg]

Eric,

I pray this gets resolved soon and Caryn is back on treatment kicking cancers butt! All my prayers and thoughts are with you both.

[Bill]

Eric, my thoughts and prayers are with you and Caryn. Like Chrisy said, your desire to continue the treatment does make a difference.

[eric]

Thanks all. Chrissy, after reading your post I emailed Caryn's doc reaffirming her commitment for staying on this drug. Good info.

[Joan M]

Eric,

It seems that Caryn is being monitored very closely and I hope and pray that her eyes clear up and improve.

Joan

[Barbara H.]

Hi Eric,
You are in a tough situation because this drug is getting amazing results. You could consider contacting Dr. Krop at the Dana Farber. He is in charge of the trials and has patients who have been on the first trial for over a year. Nevertheless, there have been very few patients on this trial to know and understand all of the side effects.
Thinking of you and Caryn,
Barbara H.

[juanita]

My thoughts and prayers are with you on this. Hope everything clears up soon.